Sunday, June 28, 2009

Update/ Moving to South Carolina...

Hello everyone... or ANYONE who still checks this blog :)

This post, as with most since my return from Chicago, is long overdue. I apologize for that. So here is an update:

At the end of March, I had the ITB pump implanted in my abdomen. This is an electronic device connected to a catheter in my spinal column that releases a steady flow of Baclofen (my skeletal muscle relaxant of choice) into the spinal fluid. I have been on oral Baclofen for years, but oral Baclofen enters the blood stream and has side effects like drowsiness when taken at high doses. The process of implanting the pump was brutal. It requires 2 surgeries and I was bedridden for a week with the worst spinal headache I have ever experienced (I have had 2 lumbar punctures and both were accompanied by this dreaded side effect, so I consider myself a pro in this field.) Needless to say, once the headache/vomiting/ pain subsided, I had experienced an increase in muscle atrophy. This, in conjunction with my inactivity during my bout with shingles, had left my leg strength all but depleted.

That being said, I returned to physical therapy to regain strength in my legs. The pump was certainly doing it's job in reducing the spasticity, and my concern became getting too "jelly legged". So we began working on a slew of exercises to increase strength in my legs and core. This proved to be mildly beneficial for the month or so I was going. I had to stop because my Mom, Dad, Evan, and I are in the process of moving to South Carolina. In about 36 hours we will be on our way with our caravan of moving trucks!

Although I can only speculate, I think this move will prove extremely beneficial for Evan and I. I will be leaving the cold, spasticity increased, winters behind, for a climate of warm, relaxing weather. The heat can also have adverse effects on MS- causing symptoms to be heightened, and then returning to normal once the body has a chance to cool- but I am confident I will know how to handle this and also use it to my advantage. I will also have free reign of a 1 level ranch, with independent access to the outdoors. This is a huge advantage for both Evan and I and the part I am most excited about! Also, being able to utilize an in ground pool for more months out of the year is also extremely therapeutic and an exciting bonus!

Before I get carried away- I did return to Chicago to meet with Dr. B. on June 10th for my 6th month follow-up. He stated he "thought I was going to be his crown jewel of the study"- and has not lost hope. He t0ld me patients undergoing HiCy see maximum effects 2 years after the treatment is over- and pushed me not to give up and to keep exercising. I also started on a new and exciting drug. It is a compounded drug (not yet available by prescription at a regular pharmacy) and it is called Fampridine-SR. It's purpose is to "increase walking speed in people with MS". How does it work you ask? MS damages the nerves that send signals to the muscles, in my case, my legs. The drug is a potassium channel blocker that helps those nerves conduct more efficiently- in essence bypassing the damage, and sending the signal anyway. I am holding out a lot of hope for this drug (as with all new things) and already feel like I have more movement in my toes. The dosage will be increased over time and I will certainly be updating with any promising results.

That's all folks! I will be updating pictures soon to show you all my hair! Being bald was so effortless- but I do love my new do!

I hope everyone enjoys their summer- Take care!

Monday, January 12, 2009

Let me start by saying this post is long overdue! Unfortunetly there has not been too much to report.. but that has changed a bit. Here's a brief update-

On Christmas Eve I ditched the wheelchair and vowed to use the walker full time around the house. That worked out well, and my whole family was very impressed with my progess. I was able to go up and down the stairs (close to 15 or so) several times between Christmas Eve and Christmas day.

Following those couple of days I began to experience and increase in spasticity in my legs. The stiffness made getting around more difficult and slowed my progress. I had decided to focus more on stretching those muscle groups throughout the day, but the relief was only temporary. Between working out at home, and with my physical therapist there seemed to be nothing we could do to get the increased tone under control.

But, low and behold, this Thursday I began to break out in an itchy yet painful rash under my right breast. It slowly spread Friday, so Saturday morning Haigaz, Evan and I were at the walk-in clinic. It was quickly confirmed that I have shingles! It has continued to spread along my stomach and around my back. I spoke to Dr. B today and he believes this disruption to my immune system over the past few weeks is why my spasticity has been out of control. So we will continue to play around with my medications, and I am confident we will figure it out.

Dr. B also assured me that increased spasticity is not a sign of a relapse- so although my progress has not been as quick as I had hoped- I have still gotten better, not worse. So I'll keep my chin up and hope for the best as I continue my road to recovery! :)

Tuesday, December 16, 2008

2 weeks :)

So it has been 2 weeks since I left Chicago and returned back home. I feel like a lot has already changed for the better. These past couple of days I have begun walking around the house and using the walker. It feels great to be up and around and not stuck in the wheelchair. I have my high and low points throughout the day and I have realized it's not about just getting from point A to point B on my feet- it's about getting there the correct way, by using the correct muscles and coordination. Obviously from my video pre-HiCy, I had not been walking the proper way. Now, post-HiCy, is the time for my body to rebuild the connections and get muscles that had not been doing their part to begin working again. During physical therapy we have incorporated several techniques to aid in this process. We are using ultrasound to loosen my heel cords so my feet and ankles are not so tight. This has already proven very effective since we started last week, and my therapist is very encouraged. Also, tomorrow we are going to begin using electrical stimulation to get my leg muscles to act the way we want them to, and hopefully assist in the process of retraining them to do those movements on their own. So basically what I'm trying to say is- physical therapy has been great!!

That's about all for now. I will post again next week :)

Tuesday, December 9, 2008

1 week back home!

So it is definitely great to be home! I love the Christmas season, and I can finally take time to enjoy it. Today was my 1st official physical therapy appointment. There was alot of stretching and testing of the different leg muscles. I can remember being there a couple of years back doing PT and it blows my mind to see what a different place I am in now. I am confident I will feel that exact way in a few months when my body begins to heal itself and I get stronger. I know I will look back at the things I struggled to do, and be glad to have overcome those obstacles.

As you can see, I posted a slideshow of pictures from the hospital, as well as a video of myself "walking" just a few days before treatment began. Obviously, it doesn't look like the safest way to get around, but even getting back to that point will be a challenge, and I look forward to posting new videos as my walking improves over the next several months!

There is another website of a man, Chris, who went through this treatment and kept a blog as well. If you follow the link below you will be able to see videos of him walking before HiCy and at 1 and 3 months after treatment. Those videos are my inspiration and the reason I pursued this treatment in the first place. Take a look and keep your fingers crossed I will have the same success :)

These are the videos to check out once on his webpage:
2/29/08- the second video

Monday, December 8, 2008

Monday, December 1, 2008

Last post in Rush :)

So tomorrow we are off!!!! We have told everyone here we need to be out by 10 am. They seem to think that will be no problem. We packed just about everything, except the morning essentials. I also booked a cab to pick us up tomorrow at 10:15. So it's official. I am definitely going home tomorrow and I can't wait!

Today my WBC count continued to shoot up to 11.65. That is much higher than what I came in with, and much higher than most people. I am still advised to wear a mask and gloves on the plane because of obvious air quality issues.

I scheduled a physical therapy appointment back home for Friday. I can't wait to start and see the improvements I can make. Again, it won't be easy... but I know it will be worth it.

Mom and I had a mini celebration tonight and ordered out. We had found this great pizza place so we decided on that. I haven't had much of an appetitie lately, but I mustered some up for a couple of slices of that pizza! :)

Being that this is my last post in the hospital I will probably only post on occasion when things change at home. I will definitely be adding a slide show of pictures and a video of me walking pre- Hicy ASAP.

I hope this blog was helpful for future HiCy-ers and I know it was a great way to keep in touch with family and friends. As always, thanks for your love and support. I know that will carry me through my recovery process. I can't wait to post all the good things that come from this treatment!

Goodnight everyone!

Sunday, November 30, 2008

My WBC count for today was 9.11! Remarkable. That's higher than what I came in with! So they have stopped the Neupogen shots and will let my body take control now.

Also today they stopped two of my antibiotics. If all goes well tonight, i'l be weined off the rest of them tomorrow, and discharged on Tuesday!! That is when we had our original plane ticket booked for, so it works out perfectly.

I still have much weakness in my legs. I can stand up but that's strictly on bone strength. If I unlock my knees, I am like j-e-l-l-o! So I am anxious to have Dr. B or Dr. T (the MS doctors) stop by tomorrow and give me advice. I didn't expect to leave here worse off than I came, but I keep reminding myself "it's only temporary"!

I think that's about it... Mom and I are watching Lifetime movies right now. Haha :)